The ME/CFS Stigma

When doctors tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds".

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I can't think of anything that sums up the cruel irony of this kind of reaction to our situation better than this. Poking our wounds. I can't think of a better way to put it.

All I can suggest at the point where you recognize that's what's happening is: stand up, refuse to engage, walk out, seek alternatives, and don't look back. After a decade or so of similar abuse, the day I first did that was a fundamental turning point for me and I remember it vividly. From then on, things could only get better.

I can't think of anything that sums up the cruel irony of this kind of reaction to our situation better than this. Poking our wounds. I can't think of a better way to put it.

All I can suggest at the point where you recognize that's what's happening is: stand up, refuse to engage, walk out, seek alternatives, and don't look back. After a decade or so of similar abuse, the day I first did that was a fundamental turning point for me and I remember it vividly. From then on, things could only get better.

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In my case I poked back - actually had some fun with it too But I think that it's just the feeling of being free of their judgements which is the most important. They're still judging, but once we get to the place where we understand what is happening to our bodies, and what is happening in their minds, and we reject them ... then those people become completely insignificant to us.

They don't hurt us anymore, or upset us, because they have been identified, cataloged, and thrown in the trash bin. We've survived them, even if it's just psychologically and spiritually, but not physically.

Doctors mostly do not even belong to the AMA, which has only a couple of thousand members..

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Thanks for the clarification. Maybe it's even more disturbing that such a small number of doctors have so much influence. It's my impression that most of the government health-related agencies are run by medical doctors. I wonder how many of them are AMA members.

In my case I poked back - actually had some fun with it too But I think that it's just the feeling of being free of their judgements which is the most important. They're still judging, but once we get to the place where we understand what is happening to our bodies, and what is happening in their minds, and we reject them ... then those people become completely insignificant to us.

They don't hurt us anymore, or upset us, because they have been identified, cataloged, and thrown in the trash bin. We've survived them, even if it's just psychologically and spiritually, but not physically.

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This is the best advice. And having the words to poke back helps. What can you say to the classic "I'm tired too"?

No idea ... I've never said I'm tired or fatigued I focused on the most debilitating symptoms, which was PEM and OI for me.

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Here in the U.S. its a perennial problem because the old name "Chronic Fatigue Syndrome" is the only one most health practitioners are aware of. Avoiding naming the illness is sometimes necessary, but sometimes not an option, and also not so great for our advocacy. Every apparently sane person who claims to have ME/CFS is an advocate for change.
So we get the "I'm tired too" line a lot. Last month, when a paramedic said it to me, I responded with, "When you start losing your fingerprints you might worry" because I happen to have lost mine, but I realize only 10% of pwME/CFS do.

Thanks for the comments. Each one is moving. It's true that there are likely other motives also for the stigma. But I believe we can do something about this. We do have power over the AMA via our government and now is a great time to flex our muscles, since President Obama has asked that ME/CFS be given high priority.

The more I have thought about what COULD help change things, the more I come back to the role and responsibility of doctors.The Canadian Consensus document instructs doctors to:

"Initiate education of the patient, their family and support network members as soon after diagnosis as possible".

Better education of doctors is relatively cheap and so should be easier to win than more expensive requests.
I'm interested in gathering a list of suggestions of helpful things doctors can do for their ME/CFS patients. If anyone has any experiences or suggestions they would be appreciated.
Thanks again for all your comments, they really encourage me to keep working on this,
Carol Schmid

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Excellent article, Carol. It summarises the situation so well.

I'm in the UK, but ideas that spring to mind for things doctors should do include:

LISTEN to patients
BELIEVE patients.
SUPPORT patients in their dealings with other authorities from whom they need help.
RECOMMEND evidence-based natural interventions, such as cutting out gluten, going low-carb, pacing and resting. (Hippocrates would approve of these!)

An excellent post. Describing the suffering, I would go so far as to say trauma, generated by the treatment people with m.e. have received is very important. Each one of us has to make a journey to clarity, to keeping the pain of this experience conscious and reflecting what has happened accurately to each other is part of that project.

My primary reservation is this:

I find this too forgiving.

I don't believe it ever was understandable. It was always deeply unethical, a denial of human suffering not seen since the early days of the AIDS epidemic. Institutions, both government and academic, and individuals who had contempt for patients, turned away from complexity. An ignorant and lazy mainstream media never challenged this as numbers grew and our intimates and the larger world abandoned a kind of imaginative compassion absolutely essential in leading a decent life as a citizen and human being

It is my suspicion that the powers that be will seek absolution of responsibility by invoking bogus claims of ambiguity and opacity with regard to m.e. They could have known, they refused knowledge. No excuses.

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Before I had ME I wasn't sure whether I believed in it, due to the conflicting info I kept coming across. But I weighed up the pros and cons of believing or not believing.

If I believed in it, and it turned out that people were just neurotic or malingering, I might look a fool and taxpayers might be paying out a relatively-small amount of money supporting them without good reason (this is the UK I'm talking about).

If I didn't believe in it, and the people were genuinely ill, that would be a terrible injustice, causing additional suffering to sick people.

Very well done. I must say that of recent years I have developed a bit of an aversion to attempting to explain this illness to others. I had just stopped doing it. But my sister read your article and responded that she had a much greater understanding of what I was going through. She has always been supportive....but now expresses even more empathy and compassion. So, that alone was worth it for me. Thanks for writing this.

Thank you, Carol. This is so well written. Like others here, I want to make a copy to hand over to any health professional I see that needs one.

I did get a bit of a chuckle out of the BIZARRE SYMPTOMS section, particularly this part:

"The writer Floyd Skloot found "the Xerox machine apparently stands for all machines in my rearranged brain." He asked his wife to Xerox his coffee, his son to Xerox the lawn, and assured his daughter that the doctor would Xerox her broken arm."

I am going to remember this, when I need to get something done around here and can't find the word for it.

Very well done. I must say that of recent years I have developed a bit of an aversion to attempting to explain this illness to others. I had just stopped doing it. But my sister read your article and responded that she had a much greater understanding of what I was going through. She has always been supportive....but now expresses even more empathy and compassion. So, that alone was worth it for me. Thanks for writing this.

Psychological and spiritual survival are just as important as physical survival.

Children should not have to 'survive' the medical people who fail to provide them with care.

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No they should'nt. I want to try to change this. President Obama is an extraordinarily open president.This a unique opportunity for action. The President had placed ME/CFS on high priority and these are the 18 months of his presidency when he is most easily able to get things done. May, ME/CFS awareness month is approaching I intend to propose a remedial curriculum for medical providers. I have had success having proposals acted on in the White House before, so I'm optimistic. I have experience teaching at medical school, so I know this is not difficult to do.
The Canadian Consensus Guidelines (a copy of which is may be given to your doctor) states that:

"Patient Support and Well' being Are the Top Priorities of Treatment"

President Obama loves personal stories.He responds to them and uses them. What I need to support my petition, are 50 of your stories of doctors or providers, or family and friends,failing to follow this principle. Or stories of when you felt really helped. Mainly I need to demonstrate I am not alone in my concern.

Do you think we could gather 50 stories? I am going to create a "Stories of Care and Non-Care" thread. The stories need to be short, under 250 words. Brief descriptions of specific incidents are best, perhaps with the impact on you or whomever you are writing about. Your stories can make a real difference.

Many people have worked long and hard to gain the knowledge we now have. Yet we arent reaping the benefits of achievments already won. We deserve to experience the benefit of all this validation and knowledge from our doctors.
Will you help us win respect and our rights to equal care?

Look for the thread later today..it will have "Our Stories" in the title. Thanks everyone who has already responded and special gratitude to any who would be willing to share in support of improving patient care. I'm sure we can achieve this. Let's seize this chance. Thanks.

NEW Thread on "General CFS News! I'd very much appreciate your responses to a poll I've started which asks "Have your providers initiated education of your family and support network?" We could really use some numbers on that.
I have started a thread in the "General CFS News" section named "Our Stories of Stigma and Support from Provierds and Others" Your stories would be much appreciated.
These will form part of a collection, together with a petition for remedial education of medical providers. Every story will be valued, and make our voice stronger. Thanks!

An excellent post. Describing the suffering, I would go so far as to say trauma, generated by the treatment people with m.e. have received is very important. Each one of us has to make a journey to clarity, to keeping the pain of this experience conscious and reflecting what has happened accurately to each other is part of that project.

My primary reservation is this:

I find this too forgiving.

I don't believe it ever was understandable. It was always deeply unethical, a denial of human suffering not seen since the early days of the AIDS epidemic. Institutions, both government and academic, and individuals who had contempt for patients, turned away from complexity. An ignorant and lazy mainstream media never challenged this as numbers grew and our intimates and the larger world abandoned a kind of imaginative compassion absolutely essential in leading a decent life as a citizen and human being

It is my suspicion that the powers that be will seek absolution of responsibility by invoking bogus claims of ambiguity and opacity with regard to m.e. They could have known, they refused knowledge. No excuses.

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You make a very important point. This is medical abuse and many of us are traumatized by it. When doctotrs tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds".

.

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When doctotrs tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds".

Before I had ME I wasn't sure whether I believed in it, due to the conflicting info I kept coming across. But I weighed up the pros and cons of believing or not believing.

If I believed in it, and it turned out that people were just neurotic or malingering, I might look a fool and taxpayers might be paying out a relatively-small amount of money supporting them without good reason (this is the UK I'm talking about).

If I didn't believe in it, and the people were genuinely ill, that would be a terrible injustice, causing additional suffering to sick people.

I am very glad that I decided to believe.

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Very sane and lucky that you're not burdened now by regret.

It's useful to hear how convincing the denialist views of m.e. sound.

During the last couple of months I've been revisiting the hysteria hypothesis. What these writers have in common are a desire to appear as authorities and the inability to consider consequences of the opinions they hold, consequences that should have aroused fear and trembling because it meant, if they were mistaken, condemning millions of people to great physical suffering, impoverishment, marginalization, and death. Being wrong was never a part of their moral calculus.

One of the questions the handling of all of this asks is what does it take to cut through this lack of awareness unto oblivion that happens when the ideological powers of the society are arrayed against your position.

The saving grace is that there can never be complete seamlessness. But it can certainly appear that way sometimes and up until a few years ago it did.